The Truth

My previous post I talked about how as an automatic response I tell so many "I'm good". 
Last night I realized that while it is ok to give this quick response to the coworkers and casual acquantainces it is not a good idea to give the same response to my family and close friends. 

There are things I need to voice and be able to relay to them so that they can fully understand.  There are times when I am tired, but the level of exhaustion I have affects my thinking and even makes me struggle with conversation.  The fatigue I feel also results in heavy tired arms and legs, increased tremors, parathesia and itching.  If I want these people to understand and support me I cant use the "I'm good" with them.
I fear in my attempts to get them to understand how as a person with MS, dealing with fatigue and the other symptoms that I am going to come across as an overly dramatic drama queen.

I have also recognized some of the emotions I feel because of my MS are not something I should be brushing off with the ones I care about.  I know the day of and day after my needle I am angry.  Normally I try to be a positive person but there are days I struggle.  I need to tell my loved ones (my husband especially since he bears the brunt of this anger) that it is the MS and not me and not them.  Sometimes I act out but I want them to know they are not the cause of these feelings but I need their patience and maybe a little space to work through this anger.

I am going to make a concious effort to choose my words carefully with those I care about.

"I'm doing good"

I use that phrase several times throughout my day. The coworkers I haven't seen in months all comment on how good I look and ask how I'm doing. To which I automatically respond "I'm doing good". 

I can't tell just anyone how my new normal means I don't have feeling or control of my right hand.  I can't share that sometimes even though I have to pee my bladder doesn't relax and I can't perform the simple function so many take for granted. I couldn't put into words just how awful the side effects of my Sunday night needle are.  How I fear the cold weather and how it causes pain to my hands.  I don't mention the moments where my legs give out, of the itching, tingling and tremors my body randomly experiences that keep me awake many nights. 

Just as I don't want to share these intimate details of my disease, these people also don't want to hear them.  

 So instead I smile and say "I'm doing good". 

In Sync

My husband and I are on the drive home from our 5 day get away. I don't think I could put into words just how good this was for us as a couple. 

As we are getting closer to home and the kids I realize while I am excited to see them the kid free time was a treat for us. 

There are a few key differences that we appreciated on this trip. 

We ate what we wanted when we wanted. There was no three meals a day, and late night appetizers in lounges. We strolled downtown and stopped in at a pub for happy hour.  It has been a long time since we didn't have to vacation that way and it was a welcome surprise. 

While the kids weren't far from our thoughts, it was nice to leisurely walk holding hands.  There was no worrying about where the kids had wandered off to. No whining, complaining. Time really didn't matter to us. We could have spent over an hour in a guitar store (which we did) or trying on dresses (which we also did) and we didn't feel rushed. 

Aside from last years trip to Newport Beach, CA for my CCSVI procedure we haven't ever been away just the two of us. I now get the meaning of reconnecting. So much of a couples marriage is focused on the energy needed to raise your children. That is the most important job in your life as a mother or father, but what gets lost sometimes is how much easier it is to do that job when you are in sync as a couple. 

This weekend was about that sync and reconnection. We spent the weekend enjoying the one on one time with each other. This time made me reflect on just how much I love my husband and how thankful I am. Sometimes we get so busy in our lives as parents we forget to show that appreciation or enjoy the time together. This was a good reminder and one I won't soon forget. 

Strength & Inspiration

For my FOAF friend Denise.  She inspires me and shows me just how strong and brave she is.

xoxo Denise!  You are loved by many.

In Good Times & In Bad

My Husband and I recently celebrated our 9th wedding anniversary.  9 years ago when we married I couldnt imagine us being any stronger, closer or more in love than we were.  I was wrong.

In the past few years we have certainly gone through some difficult and trying moments.  We had some hiccups with the blended family, parenting teens, moving to a new house, the death of my Dad, my MS diagnosis and the stressful months leading up to that.  I strongly believe that while our marraige has far more uncertainty that I ever thought it would, I am more certain than ever that we are stronger and more in love than we were 9 years ago.

The marriage vows "in good times and in bad' and "in sickness and in health" couldnt ring more true.  All the bad times and sickness we have weathered have brought us closer together. 

"The couples that are meant to be,

are the ones who go through everything that is meant to tear them apart

and come out even stronger."

As uncertain as our future is, I am certain that the love we have will outlast that uncertainty. 
We leave on a get away tonight.  I am looking forward to the trip and the wonderful memories we are going to make.

The Story of Amanda Todd

I was moved by the recent suicide of a 16 year old girl in Canada. The girl was someone's daughter and made some bad choices in her life. These choices followed her and haunted her. The sad part is there were people that were filled with hatred that bullied her and made her life hell because of these mistakes.

I find this such a sad story because it could have been my story, it could have been my daughters story. It could have been anyone because when you are growing up you make mistakes. That's all part of growing up. Those are your life lessons.

I am not too old to forget the mistakes I made as a teenager, I can also recount several life lessons my teenagers have already experienced.

I find it tragic that this girl felt so alone. I find it hard to comprehend that after her death the haters are still hating.  If I do one thing right as a parent I want to make sure my children know its ok to make mistakes in your life, to choose the wrong decision and still get through it. I also want to make sure that they never EVER do anything to make anyone feel alone.  If someone has made a mistake and feels alone and isn't sure why they are still living I want my children to remind them why they are still here and that they are not alone.

Growing up 20 years ago was scary......watching my children grow up now is even scarier. I want good to win over the hate. I want life to be safe and happy.
The past few days I feel sadness for Amanda and her family, but I pray the good wins and her youtube video is not the ending but the beginning of understanding and compassion.

Amanda Todd

Day 2

Today is day 2 of my return to work.

Aside from my insecurities about my disability I am doing it.  There are wonderful warm moments when a coworker says how happy they are to have me back, when my manager pulls me aside and asks me how things are going or when my good friend asks me at the end of the day how things went.
See, I'm not the only one that wants me to succeed at this. I have a whole cheerleading team on the side lines. From my friends and family to my coworkers I have nothing but positive support and concern.

The wonderful moments make up for the fatigue I feel at the end of the day.  The warm fuzzy feelings  I get help offset the cold numb hands or the intense itching I've been experiencing.

My return isn't going to be without challenges and there will likely be some hiccups along the way.  But after day 2 I am feeling good. I'm ready.....bring on day 3!

Changed

I can be changed by what happens to me,

 I refuse to be reduced by it. 

In two days I will be returning to work. I haven't worked since November 23,2011. In the past 10 months I have been changed by what happened to me. 

I had the CCSVI procedure.  Less than 6 months later I received confirmation that my veins narrowed again.  I switched my injectable medication from one that makes me sick every other day to one that makes me sick once a week. I had my second MS attack and my first round of IV steroid treatments. My disease changed in classification by SaskHealth from clinically isolated syndrome to Multiple Sclerosis. 

The things that happened to me changed me. I am no longer the person I was. But they have also taught me lessons. They taught me to take a chance. There is greater risk in never trying. I have no regrets about the CCSVI procedure.
I have also learned that it is ok to give up and try something else. In deciding to switch medications it took a lot of soul searching and I had to come to the realization that by changing meds I wasn't admitting defeat or failing but merely changing my plan of action to fight my disease. 

When faced with my 2nd attack I was also taught that every choice you make is not set in stone and based on circumstances you may want to change your mind. Never say never. I said I would NEVER take the steroid treatments to treat my MS attacks. After my neurologists laid out my options after my attack this summer I chose the steroid treatment. I was changed by what happened to me, but not reduced by it.

I am returning to work in two days....I am returning changed but I am also returning with the hope that I will be able to make my return to full time. As illogical as I know it is, I base some of my self worth on my ability to succeed at work. I want this. I want to be a full time employee, a mom, a school volunteer, a hockey mom, a ringette coach, a loving mother, daughter and wife. I want to be all these things inspite of the fact that I am also a person with MS.

I'm hoping despite the changes I will succeed. Wish me luck!

Thankful

Today we are going to my brothers to spend Thanksgiving with him and his family and my Mom.  I am thankful that we are getting along a little better.  I also know my Mom and my Dad are also thankful for this.

This weekend is a good time to reflect and be thankful for all that we have.  I am thankful that my Mom's health has improved and she is able to resume living in her home for now.  I am thankful that my family is healthy. 
Very thankful after a scary accident that my 16 year old daughter is healing and safe.  Im also thankful that while Austin is broke and jobless he has a roof and is still in contact with me.  I have learned to change my expectations of him.  My hopes are now ones of surviving and safety, gone are the ones I had of him succeeding in post secondary, finding enjoyment in his job, maturing and accepting responsibility as he enters the adult world.

Im grateful my health is at a point where I am able to return to work this week.  Im also thankful for the support of my coworkers and manager, family and friends.

Happy Thanksgiving!